Ssurgeon General from Sally

From: Sally Grigg (lostcst@mcn.org)
Wed Nov 21 14:52:15 2001


Dear Ginny, We want the Surgeon General. Remember, he was the person who first talked about tobacco as bad. I know its a new one. But lets contact him/her with our problem. And my computer is trying to crash again, so if you don't hear from me that's why. LOve, Sally

Ginny Halpern wrote:

> Everyone:
>
> I think Sally has hit the nail on the head. We suffer from a
> debilitating, very stressful medical entity that is so misunderstood and
> even neglected by the medical profession that we are subjected to
> extremes.
>
> I have recieved many, many letters from you asking why you are being
> told once you've had a laproscopic exam and been diagnosed with
> adhesions to seek psychiatric assistance. It escapes me as to why
> surgeons are telling women, typically between 25 and 45 that "adhesions
> do not cause pain" and therefore, are directing you to seek ongoing
> therapy. (mental "cleansing"!!)In effect, you are being told your pain
> doesn't exist in your belly, only in your brain.
>
> We can all sit here on the chat board and talk about the multiple
> surgeries we have had, the various conflicting diagnoses we are getting,
> the refusal by some pain management doctors to treat us long term with
> opioids for unmanageable pelvic pain, and the discussion of horror
> stories from ER visits where we have been accused of being drug seeking
> junkies, "bored housewives" and people suffering with hypochondria and
> other insipid opinions.
>
> The bottom line remains, we have a valid, debilitating condition that
> has resulted either from too many operations performed by surgeons
> trying to cure the incurable with more cutting or by surgeons attempting
> to get us off their backs (we are the bane of the surgeons's world
> because we never go away, never heal completely and always have a degree
> of pain)
>
> I have watched this board evolve from a few dozen of us last year to
> hundreds, looking for answers and for help and I have yet to see ANYONE
> announce that they are totally free of pain, have been treated like a
> human being with a legitimate illness and have found a resolution to
> their concerns.(Yes, I have seen remarkable responses from a very small
> % of you who have had positive results from Dr Redan and others like
> him)But most of us are still floundering for help and for validation.
>
> By the way.............if you try to sign up for Social Security
> benefits based strictly upon your adhesions related disease and the
> subsequent pain and inability to control bladder/bowels, etc, you may be
> surprised to learn that we are still not considered a valid disease
> process as far as SSI is concerned. It doesn't matter if you wet your
> pants every few hours and can't work without Morphine.....ARD isn't a
> "known disease" according to Social Security.
>
> If you are an alcoholic or drug abuser you stand a better chance of
> being accepted for Social Security disability benefits than if you have
> adhesions! Believe me, I KNOW. I am fighting this right now, for
> myself.
>
> I guess we can all continue to talk about this and share stories, which
> is a wonderful chance to release the frustration, and the
> anxiety.....OR...we can start petitioning someone to do something.
>
> I DO NOT know who to petition first, right now,, but I promise you I
> will make this my project if even a few of you offer me your support.
> I only want to know if even some of you are willing to work with me on
> educating doctors, surgeons, pain specialists and all others who are
> treating us like we are freaks, giving them the info they need and the
> resources they need to better educate themselves.
> I've got to tell you folks, over a year I have read the same concerns
> the same questions and the same responses from you and from your doctors
> and I have seen very few of you who come back and talk about the
> "excellent, respectful, professional" treatment you have recieved every
> time you complain of adhesional pain. Except for the few of you who are
> lauding Dr Redan, I am not seeing a shift in the overall response to our
> disease.
>
> Sally, you are 100% correct. We ARE AT THE MERCY OF THESE DOCTORS/ They
> do NOT know what they are doing with us and they are as frustrated as we
> are, but now, the most current suggested surgical process is to remove
> all organs from our otherwise healthy bodies and hang bags and tubes?
> GIVE ME A BREAK!!!!!!!
>
> I am willing to petition Washington DC if necessary, and I will go there
> alone! But I need your support, your thoughts and your ideas.
>
> You can talk all you want about this ache and that pain and the way you
> are being ignored and lambasted but if you refuse to offer me the data I
> need, I can only tell you I send my hugs, my best wishes and I sign off
> this board for now.
>
> I need to know how you are recieved in ERs when you have a pelvic pain
> crisis. How your family doctor is treating your ongoing pain. How the
> surgeons are directing you once they've established that you have
> adhesions. What you are being told as a long term prognosis after
> surgery. If your pain is being managed sufficiently. If you are being
> told to (in effect) get lost after your inscision has healed.
> I need data before I can go to bat for you and for me.
> Help me help you?
>
> We can't be cut open every few months, fed pain pills and told to see a
> psychiatrist as a final solution. We need to be recognized as people
> with a disease process as valid as diabetes or cancer.
> I need your input......Please.
>
> Ginny
>
> gingin99@home.com
>
> At Tue, 20 Nov 2001, Sally Grigg wrote:
> >
> >Sometimes we trust our doctors too much. We don't really have many
> >choices, but sometimes we can just say NO. And go looking for a doctor
> >who isn't so quick to cut. We're in a no win situation with the medical
> >care situation as it currently functions. Since they don't really know
> >what they are doing, we are at their mercy. And we are in such pain,
> >that we'll say yes to just about anything to alleviate the pain. It
> >would be better most of the time to take pain pills until the
> >researchers find a cure and they will. I have faith. Love to all, Sally
>


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